Sharing sources is a great thing! It's the reason you are here, the reason I 'm here too.
Obviously, when source code represents a device driver or a software with straightforward functionalities, the sharing pleasure is its own reward. On the other hand, when the open source strategy is to provide people with a lever to address complex issues, it is probably wiser to share the project's global vision before sharing the deep dark details.
More and more people agree that there is a need for a paradigm shift in health. This is not the place to get into all the details; let's just evoke two parts of the problem: population aging (due to baby boomers approaching retirement age) and innovation pause (because big pharma's pipelines no longer hold any blockbuster drug; most useful electronic devices have been delivered already).
Cohen clearly described some years ago what should be the new paradigms of care for practitioners:
| The individual | → | The community |
| Acute disease dominates | → | More chronic illness/disability |
| Episodic care | → | Continuous care |
| Cure of disease | → | Preservation of health |
| Reactive | → | Prospective |
| Physician provider | → | Teams of providers |
| Paternalism | → | Partnership with patients |
| Provider centred | → | Patient/family centred |
| Parochial health threats | → | Global health threats |
Cohen, J (21st Century Challenges for Medical Education; 9th International Medical Workforce Conference; Melbourne, Australia; November 2005).
Unlike usual electronic records, designed for episodic care and instant snapshots, Episodus is based on the vision that genuine health management can only be achieved through continuity of care.
To follow up a person's health over a significant period of time is really about telling her health story. What is at stake here, in order to have actors contribute properly, is to record past events as well as current goals and planned actions.
No need to say that you will not find here any data model described as an UML file and materialized as a database. No need to say either that it is much different from the usual pattern simply aimed at providing a persistence repository for attribute-value pairs.
As depicted by Cohen, health management should no longer be about lone profesionnals making decisions from a restricted set of information. Actors now have to behave as contributors in a team work.
If we are to drive this major evolution, our challenge will be to present each health team member around a person with clear answers to 3 questions:
| Now: | What are we working on? (what health issues have to be addressed?) |
| Before: | What has already been done? (health journey history, ideally along with decision making history for major events) |
| Next: | What are the goals? (what is expected and planned?) |
To address such issues is the core business of any Project Management System. Actually, it should be very mundane to assert that any professional team needs a tool of the kind; it still remains, however, an innovative claim in health.
The reason why a data sharing environment in health is seldom envisioned as as a Project Management System is deeply rooted in a "chicken and hen" paradox about what should come first between the team (in need for a tool) and the tool (needed to aggregate the team). Let's explain this.
What we name a "continuity of care team" taking care of Mr Smith is actually nothing more than an ever changing network of scattered individuals whose only common point is to share Mr Smith as a "client". Furthermore, for historical reasons, health professionals are very comfortable when making decisions by their own, then send a report to whom, at that time, appears to be the person in charge (if any).
No surprise that health professionals always consider that an information sharing environment should look like a Documents Management System, and are probably not ready to use it anyway.
Now, let's imagine that Mrs Smith claims that her health deserves to be managed as a genuine project and provides the Project Management System as a backbone for her practitioner's dedicated business processes.
Besides the obvious fact that Client is King (even if patients are seldom in a position to claim such status), there is arguably good chances that she can enroll professionals in her health team. Reasons for this optimistic assessment range from the fact that health professionals usually graduated from University Hospitals, where they were used to participating to staff meetings for decision making, to the fact that a truly "action oriented" Project Management System could deliver a very quick understanding of the situation and, accordingly, save time while reducing errors.
Among all issues delineated by Cohen, the need to switch from a reactive to a prospective behavior is probably one of the most challenging since it expresses the need to explore the complex universe of risk management.
When any health professional makes a decision, it is usually the result of a complex selection of the best risk-benefit ratio among a range of possible behaviors. Hence one can claim that risk analysis is at the core of every process in health.
However in usual practice, neither the set of hypothesis that lead to the final selection (history of decision making) nor the consequence of this decision in term of risk (for further risk management) are explicitly reported; the final printout actually contains very little traces about the "natural neuron network" processing inside a practitioner's brain!
This is a serious issue in term of drug prescription, for example, since some specialists usually prescribe a set of drugs with known adverse interactions because they think that this drugs combination is indicated and, due to their excellent knowledge of adverse risks involved, they estimate that the risk-benefit ratio is worth prescribing (if properly followed up). This proper follow-up is usually the weak part of the process, since most information about it is not transmitted to the rest of the health team. This can lead to poorly addressing further adverse interactions issues, and more frequently to badly manage the follow up - up to a point where the risk attached to the prescription can become dramatically high.
In contrast, explicit risk management would imply to record risk information as true parts of the health project management (for example "risk of coagulation problems" or "risk of renal insufficiency" should be handled along with genuine health problems such as "diabetes"). Accordingly, the follow up processes to keep risk level as low as possible would be recorded as health goals so that other team members can get involved in their fulfillment.
A reference frame defines both the center and the shape of the universe that can be described by an information system. When mankind had a reference frame centered on earth, it was obvious (and true) that the sun was turning around our planet. A modern understanding could only be achieved due to a reference frame shift.
In health, every system now claims to be "patient centered" though their reference frame always relates to the care place.
Just consider access rights, and you will usually discover something like a Discretionary Access Control (DAC) matrix : a square frame where care place's professionals are properly aligned "along the walls"; at best you will discover a role based access control (RBAC) matrix: another square frame with care place's roles instead of professional characters.
Another more deeply grounded, so less visible, example can be discovered when analyzing terminologies (or coding systems, ontologies, etc). It is usually a "subtle mix" of local ad hoc terminologies along with a bunch of coding systems for specific exams, for dedicated specialties, etc. Ad hoc information components in practitioners' frame, Tower of Babel for those who, while attempting to aggregate their personal health information would have to pile up heterogeneous terminologies.
You may ask yourself how any patient can be the center of a reference frame with the shape of an organization she doesn't belong to and furthermore only goes through (as inpatient) for a very limited period in a lifetime.
Since it is mandatory for the Personal Health Project to be really patient centered, the system has been designed from the very beginning with polar coordinates in mind; that's to say that its universe is described according to the situation around and the distance from the patient.
Access rights, for example, are defined as a patient centered rose with a petal for each role (medical doctor, other health professional, social servants or family); in each petal, actors are sorted according to there proximity with the patient.
The hard part when building health systems owned by professionals is to make them flexible enough so that they can be customized according to the specific needs of various specialists in various places.
Want to figure out what it can look like in real life? Then check these slides where true screen shots of Episodus produce a short health story.